Further study details as provided by Weill Medical College of Cornell University:

Primary Outcome Measures:

The prevalence of females with severe or moderate hemophilia A or B in the United States. [ Time Frame: Study Duration ] [ Designated as safety issue: No ]

Secondary Outcome Measures:

Collect existing data on the genetic and/or chromosomal causes for severe and moderate hemophilia A and B in females in the United States. [ Time Frame: Study Duration ] [ Designated as safety issue: No ]

To determine the natural history of hemophilia in females by collecting and analyzing data on the symptoms, treatment patterns, and complications of hemophilia in this cohort. [ Time Frame: Study Duration ] [ Designated as safety issue: No ]

Collect and analyze data on the health-related quality of life and psychosocial adaptation to disease of females in the United States. [ Time Frame: Study Duration ] [ Designated as safety issue: No ]

This study is designed as an epidemiological study with retrospective clinical and genetic data collection and prospective quality of life (QOL) data collections and genotyping of subjects without current molecular diagnosis. Data on the genetic/chromosomal etiology of the condition will be collected through chart review. For those subjects who have not had molecular or cytogenetic analysis, molecular and cytogenetic testing will be offered after genetic counseling. Those subjects who agree to have genetic testing will have 5-10 ml of blood drawn and sent to the cytogenetic laboratory at Weill Cornell Medical College for testing to determine the chromosomal complement, and 5 ml of blood sent to Dr. Arupa Ganguly at the University of Pennsylvania for the identification of a factor VIII or factor IX mutation, and X-chromosome inactivation studies.

Eligibility

Ages Eligible for Study:

1 Month and older

Genders Eligible for Study:

Female

Accepts Healthy Volunteers:

No

Sampling Method:

Non-Probability Sample

Study Population

Females with severe or moderate (less than 5%) hemophilia A or B.

Criteria

Inclusion Criteria:

Females with severe (FVIII<0.01u/dl) or moderate (FVIII-0.01<0.06 u/dl) hemophilia A

Subjects who do not meet the inclusion criteria with respect to gender or hemophilia severity.

Contacts and Locations

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study.
To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below.
For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00936845